Abstract
For patients with multiple sclerosis (MS) involvement in treatment decisions becomes
ever more imperative. Recently new therapeutic options have become available for the
treatment of MS and more will be licensed in the near future. Although more efficacious
and easier to administer, the new drugs pose increased risks of severe side effects.
Also, new diagnostic criteria lead to more and earlier MS diagnoses. Facing increasingly
complex decisions, patients need up-to-date evidence-based information and decision
support systems in order to make informed decision together with physicians based
on their autonomy preferences. This article summarizes recently terminated and ongoing
trials on MS patient education and decision aids conducted by the authors' study groups.
Programs on relapse management, immunotherapy, and for patients with suspected and
early MS have been developed and evaluated in randomized controlled clinical trials.
It could be shown that the programs successfully increase knowledge and allow patients
to make informed decisions based on their preferences. For the near future, we aim
to develop a modular program for all relevant decisions in MS to increase patients'
self-management and empower patients to develop their individual approach with the
disease. Faced by a disease with many uncertainties, this should enhance patients'
sense of control. Still, it remains a challenge to adequately assess decision quality.
Therefore, a study in six European and one Australian centers will start soon aiming
to establish adequate tools to assess decision-making quality.
Keywords
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Article info
Publication history
Published online: October 04, 2010
Accepted:
September 9,
2010
Received in revised form:
August 30,
2010
Received:
May 15,
2010
Identification
Copyright
© 2010 Elsevier B.V. Published by Elsevier Inc. All rights reserved.
